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Slow down this ride so I can enjoy my infertility

Hello pals. I’ve been a bad, bad blogger, haven’t I? I never anticipated I’d be gone this long, but then again life has a way of always delivering unto me that which is unanticipated. Dead mother? Check. Infertility? You betcha! What’s a little bit of why-is-my-life-so-crazy-right-now-of-all-times-dear-god-it’s-the-TWW-I-don’t-have-time-for-this between friends?

I honestly don’t even know where to begin. And, I guess that’s a large reason why I’ve been AWOL. So, we’re just gonna roll stream of consciousness style…

I’ve been doing a lot of waiting

First, there’s the obvious – my IUI was 9 days ago, and my pregnancy test is 5 days from now. I have no idea how I feel about either of those things. Knowing what we know now, that we didn’t know when this cycle began 29 long days ago, I have about 0% certainty that this cycle actually worked. My endo was much, much worse than we ever knew before, my symptoms have definitely been flaring (and it’s not all psychological… because they were before righty went missing), and last month’s total fail after tons of work and effort has me sour to the whole sperm and egg make embryo make fetus make baby thing. Since I’m so totally convinced this whole exercise has been a work of futility, I’ve been more than a bad, bad blogger, I’ve also been a bad, bad infertile. In the past 29 days I’ve eaten tons of gluteny goodness, I’ve had a few cups of coffee, and (look away! look away!) I went to and fully participated in a brew fest last Saturday (4dpIUI for those of you who are interested). I haven’t had a drink since we started trying again earlier this summer, but on Saturday I stopped giving a shit. I wouldn’t be me if I weren’t stressing out about it a little bit after the fact, but all-in-all I’m happy with my decision. I did EVERYTHING right last month, and didn’t have an inkling of a positive; maybe this minor rebellion will result in a different outcome? I drank quite a bit around O time with my unlikely ectopic, and my February miscarriage was conceived over a Christmas break that was definitely not devoid of alcoholic delights. Maybe my eggies are like their grandpa and just need a little booze to get them going in the morning?

Next, no, I haven’t heard anything about the Hope Award. Ever since the voting closed last Wednesday I’ve been holding my breath each time a new email arrives to my inbox. While it’d be totally cool to win, I’m just excited to hear the announcement so that we can celebrate as a community with the lucky winner (no matter who she or he may be!). We all do so much endless, lonely waiting; it’s nice to know there is some positive news on the horizon for one member of our community!

Finally, I’m waiting for Mr. But IF to get home from a work trip. He flew out Monday and is due back sometime in the wee hours of tonight or tomorrow morning. The pattern is always the same when Mr. But IF goes out of town. For the first few hours I embrace my new-found single-hood. Then, likely before his plane even touches down at its final destination, I start remembering how truly much I need him in my life. I’m not the mushiest person in the world, but absence makes the heart grow fonder and all that jazz. When he returns I’ll be sure to remind him of all the ways I missed him – I had to take out the trash on Tuesday, I had to empty the cats’ litter boxes, and I even had to suffer the comical indignity of an oh-s0-wonderful friend assuming his nightly PIO injecting duties. But, at it’s core, I just missed my friend.

While I’ve been waiting lots of exciting and excruciating things have been happening

Have ya’ll heard the news from our good friends Candace and Chris at Our Misconception? So I avoid putting words in their mouths, here’s what the wrote me earlier this week:

Alright so here’s the skinny… I was contacted about a year ago by MTV for their show on Infertility. So # 1 didn’t really seek this out, but my husband and I thought ok its either going to be some young snookie type chick that started trying last week or us, the real infertiles. […] So we put ourselves out there and shared every bit of our highs and lows that come with IF. Also something to note, we were not paid to do the show. Both of the couples (myself and another GREAT couple) did this simply for awareness and advocacy.

So, that’s right, this Sunday at 2PM EST MTV will be airing (the cringe-worthily titled) “True Life: I’m Desperate to Have a Baby.” The God awful title aside, I really hope this will be a positive pop culture depiction of the ups and downs of the infertility journey so many of us face. The Atlantic, Slate, and The New York Times can write as many (good and horrible) IF-related articles as they want, but MTV’s target audience probably isn’t driving up those articles’ page clicks. And, let’s be honest here, wouldn’t it be nice to have one hour free from “16 and Pregnant”? I just wish I got MTV… well, kind of… not really… Also, during the episode, Candace and Chris will participate in the #TRUELIFE1in8 Tweet Chat, moderated by @FranMeadows and @hopeful_journey. Pretty cool stuff, no?

On the other side of the spectrum, I think my bloggy meltdown commenced when I read this gem (warning: read with a glass of wine and a bevy of curse words at the ready). A few days ago I tried to blog about this, but all that came out was incoherent rage. Today I tried again. I hoped time and distance would allow me to form a more polished response to Mr. Saletan’s intentionally antagonistic “every embryo is sacred” diatribe, and I think it has. This letter is all I can muster.

Dear Mr. Saletan,

In your July 16 article “The Boy Who Lived” you crassly wrote:

Every year or so, doctors herald the arrival of a new embryo test, certified by the birth of a healthy baby. But the babies you hear about are the lucky ones. For every success, there are dozens, hundreds, or thousands of embryos that failed the evaluation. You won’t see their pictures, because they’re never born. They’re flushed away.

From the start your word choice, clearly chosen for shock and awe rather than accurate reporting purposes, told me what type of article I was reading and what type of author I was dealing with. You and so many others operate in the naive belief that reproduction is cut and dry. Sperm meets egg, embryo results, embryo becomes fetus, and fetus becomes baby. Any alteration of this order, any intervention in this path, is anathema to all that is “natural” and “right” in the world. You blindly ignore that nature already ends an estimated 40% of all pregnancies completely on its own, most before a woman even knows she is pregnant. The American Pregnancy Association reports that, “anywhere from 10-25% of all clinically recognized pregnancies will end in miscarriage.” Or, to be more accurate with our terminology, spontaneous abortion, as this is what is used for any pregnancy that ends prior to 20 weeks. We don’t you mourn those unrealized pregnancies? Why don’t you write to mourn the loss of those pictures on the wall? Four million babies are born in this country each year, meaning that a full 1 million pregnancies end in miscarriage.

Let’s compare this to the number of embryos you say are “flushed away” as a result of failing genetic evaluations. According to RESOLVE, infertility impacts 7.3 million people in this country. According to the American Society for Reproductive Medicine, only about 3% will resort to advanced reproductive technologies like in vitro fertilization (IVF). That gives us a total of 219,000 infertiles pursuing procedures like IVF. The next step gets a little trickier, so I’m having to resort to clinic-specific data. I’ve been with two REs in two different states. My current (a very large, very popular, very high traffic clinic that uses many advanced technologies) performed genetic testing on embryos in only 4% of their 2,318 IVF cycles in 2011 (the last year for which statistics are available). My former clinic (a small one-man-show office) performed preimplantation genetic testing (PGD) on 6% of their 208 IVF cycles in 2011. If we assume that these stats are about average, that means about 5% of those 219,000 IVF patients will perform genetic testing on their embryos in a given year. That leaves 10,950 patients pursuing IVF with PGD. In order for these patients to discard the same number of “flushed embryos” as nature does in a given year, each party would have to be individually responsible for the destruction of 91 embryos each calendar year. If you think that sounds like a realistic estimate, Mr. Saletan, then I have some news for you…

I’ve been battling infertility for almost 4 years, and in the process have endured 3 spontaneous abortions. The last one this past February happened at 8 weeks after seeing wiggling bits of embyonic blob and hearing the heart thump, thump, thump away. Yet, for whatever reason, that embryo stopped growing, my body dispelled it, and my dreams of parenthood were again dashed. Having lived through that loss, genetic testing becomes much more appealing. Not only to avoid the pain and suffering that came along with my loss, but also to avoid the brash and offensive response I received from the medical establishment when I presented myself to the nearest ER with an OB/GYN unit on a Saturday to attempt to collect my now-dead embryo for testing. “It’s a Saturday,” they said, “And you aren’t an emergency.” As the tears welled up they explained with finality, “There’s nothing we can do for you. Miscarriage is common. Check in with your doctor on Monday.” At my last straw I begged and pleaded for them to help me find a way, any way, to get these products of conception tested in the hope that no future embryos would suffer a similar fate. I was handed two sterile collection jars and my discharge papers. I flushed my embryo at home that night while waiting for a dilation and curettage that was scheduled two days too late. I would do anything not to have to live through that trauma again, and genetic testing is one option that promises respite from future flushings of that sort.

And, finally, what of the research value these “flushed ones” have to offer? You yourself write:

Embryo screening hasn’t made the world a sadder place. It has made it better. It has prevented cystic fibrosis and other terrible diseases. If you worry about unborn life, it’s better to catch genetic problems early, at the preimplantation stage, than to discover them in the womb many weeks later and abort the pregnancy.

And on this we wholeheartedly agree. But you then go on to question which genetic tests are worthy and which are not. To identify tests for genetic predispositions and certainties that don’t merit consideration because it risks, “[…] discarding embryos over the possibility of breast cancer, which rarely strikes before age 30, and early-onset Alzheimer’s, which doesn’t begin till 40 or 50.” Nature, you say, created “genetic misfortune” and “the ruthlessness of selection,” and in this you implicitly suggest that we should comply. Or rather, when we don’t comply, when we try to fight back, when we dare to flush, we should not “[…] hide the tragedies and the cost.” But if nature is behind these tragedies, why do you only single out the tragedies of IVF? Why not the 1 million spontaneous abortions resulting from naturally occurring pregnancies? Why not an article on those flushed ones?

If I’m forced to use your overly emotional language, I myself am more stricken by the tragedy and senseless loss of those million natural miscarriages than I am those embryos discarded after failing genetic testing (no matter the type of genetic testing to which they are subjected). And, this is for one primary reason. Those natural embryos are the ones that are unceremoniously flushed. Trust me, I’ve flushed a few myself. I sought testing, I sought answers, I sought assistance, and I was told to go home and quietly miscarry like the millions upon millions of women before me who had done just the same. When testing is performed on IVF embryos, those results matter. They are recorded, they are used to inform patients, they are used as the basis of medical journal articles. The embryos that are inspected via this testing are respected far more than the million silent flushes happening across this country every year. In their 2009 article “Destroying unwanted embryos in research: Talking Point on morality and human embryo research” Thomas Douglas and Julian Savulescu highlight exactly this point. The article is highly quotable and I struggled heartily with what to reproduce here. Should I highlight their argument that, with over 220 million natural embryo deaths each year, “[…] we ought to do something to reduce this staggering death toll: we should try to discover its biological basis and we should prioritize the development of therapeutics to prevent it given that it would be a greater cause of human death than all other causes combined”? Should I paraphrase their moral thought experiment of what to do if “[…] a refrigerator containing 1,000 unwanted embryos has fallen onto a small child and is crushing her to death”? Ultimately, I’ll leave it with their final concluding phrase, the only phrase I feel that really brings solace to those of us who face these difficult decisions as I hope, Mr. Saletan, you never have to.

Embryos have a special moral value when they are a part of a plan to form or extend a family. When they are not part of a plan to form or extend a family, they can still have a special moral value: as a means of extending knowledge and saving or improving the lives of people.

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13 thoughts on “Slow down this ride so I can enjoy my infertility”

Ugh, that article pissed me off as well. Just…inflammatory and sensationalistic and wrong.

FWIW, I’ve drank all the way through both of my BFP 2ww’s. I, too, quit giving a shit after trying and trying while not drinking, and since the embryo gets NOTHING from you in those first few weeks (gets nutrition from a yolk sac – no placenta yet) it’s not like you’re in danger of getting little embaby drunk or anything. Sometimes relaxing really is needed! I tested at 10dpIUI with Stella, got a false negative, and proceeded to get hammered. 12dpIUI, faint positive, and ya, she’s totally healthy and happy. I don’t regret a thing.

I had drinks a few days past my lucky IUI too. I fully believe it’s fine!
I’m going to go read that article now, but I wanted to say, I LOVE your response. Very well thought out, articulate, and powerful.

FWIW I went sledding the day after ET from IVF #4. I was so hopeless at that point and I was downright sick and tired of missing out on things because of IF so I went for it. That was our first BFP. As for the flushed thing. I think it is ridiculous. That pregnancy from IVF #4 ended in a miscarriage at 9 weeks with a normal karyotype (I had to fight to get the genetic testing but in my case I won by shear force of will but the doctor refused to call a courier and gave our dead baby in a jar to my husband to walk over to the hospital where we wandered around the basement to find the lab and then had to go in to find someone to give the “products of conception” to for testing). Sigh. People try to ignore that miscarriages happen and try to make IVF the boogie man out of murder defenseless embryos.

You aren’t the first woman I’ve known who had to struggle for testing. A good friend wandered empty halls at a hospital on Christmas Eve with products in a tupperware container kept cold with a bag of frozen peas… 🙁 Our D&C was delayed so long that by the time they tested all the ended up having to test was lining which, of course, came back “normal female.” I still can’t accept that we have no idea why that heart just stopped beating at 8 weeks.

If it makes you feel any better the testing gave us no reason. The pregnancy was twins one came back XO (I assume the one that never had a HB) and the other normal XY. We were at a doctor for the D&C so I don’t get why he couldn’t get a courier. The RE wanted me to wait till Friday (this was a Monday) because he was too “busy” so busy in fact that he couldn’t even talk to me about it he just kept sending his very pregnant nurse back and forth. He was quite the douche bag in the end and I thought he was great in the beginning because the first RE was a colossal douche. Sigh. If your patient that has done 3 IVFs with you is having a miscarriage MAKE time right. Then he had an attitude that I went to the OB/gyn office that would take me that day. So bottom line after all that we have no idea what happened in our case at 9 weeks on the day we were supposed to graduate from the OB just like we have no idea WHY I am infertile. I don’t accept “idiopathic” as a reason for my anovulation. That just means the doctor and the whole the medical profession doesn’t have a reason and just want to sound fancy about saying I have no idea nor do I care. The new RE office has me as unexplained now. Isn’t that a hoot?! 🙂

Well, it doesn’t exactly make me happy that you didn’t get any answers, but it does help to know (and I do know this) that even if we did get the D&C in time we still might have been left with nothing but question marks.

I found out the heart had stopped on a Tuesday, and the earliest my RE would schedule me in for a D&C was the following Wednesday. When I started actively miscarrying on Friday I called and they said, “All we can do is move you to Monday” (which was still too late). I tried going to the hospital that my former OB was affiliated with, and they sent me home with two sterile collection jars since I wasn’t “an emergency.”